Journal

Journal entry by Trish Richhart

We have struggled so much as a family these past few weeks. Beyond Samuel's cancer and how that affects all of us, there have been a crazy amount of extra unusual challenges we have faced.  Barry didn't know it at the time, but got into some poison ivy which he has a strong reaction to.  He has been covered with the painful itchy rash for the last couple weeks.  Rachel was shot at close range in the eye with a nerf gun which resulted in a scratched cornea, but thankfully nothing more serious.  I've also had Patrick, Abi, and Anna into the doctor for health issues.  Elizabeth is still fighting anemia and fatigue, and the baby is teething and not her charming self.  This is way beyond the normal craziness for our family and our anxiety levels have been high.
 
Then there is our dear cat, Rosie.  Her nearly 20 years of life had caught up with her and we realized she was probably in her last days with us.  Last night we had to say goodbye to her and it was not easy.  Our family is still grieving.
 
Last week I made a desperate plea for prayer.  Thank you for lifting our family up!  Although our problems are not gone, I have felt the burden of my anxiety lifted.  I do not understand how prayer works, but I can testify that it indeed does.  Our needs still remain, but we have been comforted with God's presence and have seen Him at work.
 
Last week we finally had the opportunity to discuss the next steps for Samuel's treatment with his oncologist.  His team feels that the treatment we discussed back in April is still the best choice for him.  We have been praying daily for God to impart His wisdom to Samuel's doctors and to us.  Although we hate the idea of starting chemo again, we agree with this as the best option.  The plan is to give him 7 days of azacitidine which he has had before and has been partially successful.  Then that will be piggybacked with a new drug, Mylotarg, on the 8th day.  This drug targets a protein on Samuel's specific leukemia.  Hopefully, it will be the one-two punch that he needs.  There is some good news in all of this.  Assuming he has no complications or fevers with the chemo, Samuel will get discharged after receiving the last dose.  He will not need to stay in the hospital until his counts recover.  8 days sounds so much better than a month or more!  We are all so thrilled about this and are already praying for no complications.
 
This new drug has limited availability and requires a special request to the manufacturer to get access to it.  Samuel meets all of the requirements, but needs specific labs drawn and paperwork submitted to the company.  He has an appointment Tuesday in clinic to do that.  He also already had an appointment scheduled with the orthopedic doctor that day as well.  Thankfully we can take care of both with one trip to Indy.  I was told it takes 3 - 7 days to be approved and get the drug.  So, I am assuming that Samuel will be admitted and begin treatment the following week.
 
There are many who have stepped forward and offered help to our family.  We are so humbled and grateful.  Most members of our family have an independent, "we can handle it ourselves" attitude which makes it hard to not only accept help, but to even know what specific things to ask for help with.  However, I feel like God is trying to teach us a lesson about allowing others to be His hands and feet.  So, we are praying about this and plan on asking for more assistance for when I am away at Riley with Samuel.  Please know that your prayers and assistance are so appreciated.  Thank you!
 
Prayer Requests:
  • Complete and total healing for Samuel
  • No leukemia growth
  • Continued wisdom for Samuel's doctors and parents
  • No complications getting approval for the Mylotarg
  • A helpful orthopedic appointment to see the extent of his AVN and to understand how to give him pain relief
  • Help in preparing our family for this season of cancer treatment and hospital stays
  • Relief from the anxiety that is always trying to invade our home
  • Peace for each member of our family
Still trusting in His mighty hand,
Trish
 
 

Journal entry by Trish Richhart

Our family has been in a strange place these last couple of weeks knowing that Samuel is in need of more treatment for his leukemia which will once again turn our family's life upside down, but not yet knowing the timing or details of that. It has produced anxiety in us all as we try to prepare ourselves. It also seems that there is a spiritual component at work in this, as well, and the enemy has waged an attack upon our entire family. I see the effects on each of us. I think my sweet Anna has suffered the most. I do not want to dishonor her with my sharing because she is a private person. However, she is in the need of prayer. In truth we all are! I struggle to understand why God would allow us to face such difficult things. Is this a test of our faith? I feel like the enemy is whispering in my ear, "How can you trust God? Look what he has let happen?" But I DO still trust Him. We have still seen Him at work within all we are going through. But it is still hard. Really hard. So I humbly share this because I'm asking for prayer. I know there are many dear prayer warriors who have been faithfully praying for Samuel and our family. We all need you now. Please include Anna specifically. Although things have been rough on all of us, her sister, Elizabeth, is taking these circumstances especially hard. Speaking for myself, I am emotionally spent. I am merely functioning on God's good graces at this point.

Journal entry by Trish Richhart

Life is truly bittersweet. Even in the midst of bitter, hard times, sweetness can still be found. And even during sweet moments, bitterness will often show up unexpectedly. Wednesday was a sweet time. Three of my daughters and I roadtripped down to Indy not to visit a hospital, but so that my oldest could compete in the Starbucks Barista State Championship. It was a fun day celebrating her wins that got her there and, of course, coffee. It was in the midst of this that I got the phone call. The call with the results from his bone marrow. Unfortunately, in was not what we had hoped and prayed for. Samuel's leukemia has increased nearly ten fold again from 0.3% to 2.7%. I am having trouble expressing what I feel about this. Obviously, we are disappointed. Also surprised. Although, we knew there was leukemia, and it would be expected to grow, we also had hoped that this was the time God had chosen to work healing in his body. He had already suppressed the disease for months and also given Barry and I such peace. However, we are not the ones who get to write this story. The reality of that is hard. I do trust God in this, but my human nature wants more control. The most heart wrenching thing has been telling Samuel. It has been six months since he has been admitted to the hospital, the longest span since his diagnosis. He has tasted freedom and the thought of giving that up is almost more than he can bear. My little guy, who has been so tolerant and good natured through so very much, wept uncontrollably. It's not about the leukemia or how hard the treatment may be (which he understands all too well), but being away from his family and stuck in the hospital far from home. He will most likely be admitted for treatment and have to stay until his blood counts recover which will probably take a month. He is familiar with the process and knows this without even being told. No definite treatment plan has been decided yet. The team of doctors at Riley will be talking about his options and then discussing them with us. We may have just a week together as a family before we need to start. Then it is back to running this marathon, back to family survival mode. Sigh. Right now I do not wish to think too much about this. My goal is to enjoy this time we have and live without regret. I know that none of this is a surprise to God and He has a plan and purpose for Samuel and our family through this. So I choose to trust Him. "There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!" Romans 5:3‭-‬5 MSG PRAYER REQUESTS: - Complete and total healing for Samuel - God's wisdom and direction for Samuel's doctors and his parents in deciding next steps of treatment - Good health and strength - God to pour His peace into Samuel and our family - To make the very best use of the time we have been given Still trusting in His mighty hand, Trish

Journal entry by Trish Richhart

I have had several people asking me about Samuel's leg and the results of his x-ray. Thank you for the care and concern. Although his leg was imaged on Tuesday, we were unable to get official results until Friday. That was frustrating, but was the cost we paid for getting the x-rays here in Fort Wayne and saving ourselves the drive down to Riley. Apparently information did not transfer efficiently. Thankfully, Samuel's leg is not fractured. By the time we got the results of his x-ray, he had begun to walk on his leg again and I doubted it was fractured. We are still learning about his condition (avascular necrosis), and I suppose the pain that he experienced may just be his new normal which we need to figure out how to manage. Although not ideal, Barry and I agree that we will take this over leukemia any day. Yesterday was Samuel's day at Riley. He had labs drawn and a bone marrow aspirate. He is sedated for this procedure where they insert a large needle into his hip bone to extract marrow for testing. I have lost count of how many times he has had this done. Thankfully, he handles the sedation and the procedure well. Yesterday his siblings at home decided to FaceTime him on the iPad when he was in recovery which was a fun and entertaining way to wake up. Samuel's labs once again look good. His blood counts are all stable and show no signs of leukemia. The telling thing will be the bone marrow results, but we won't have those until later this week. These are the days of waiting which we usually spend worrying. However, Barry and I feel an unexplainable peace. This can only be from God. We are hopeful that the results will show that his leukemia level will be the same or lower than it was in June. However, even if that is not the case, we know beyond any doubt that God is caring for Samuel and we are all in the palm of His mighty hand. However steep the road is ahead, He is going to walk us through it. That being said I really, really want an easy path and to be able to coast a little longer. But I trust my God. PRAYER REQUESTS: - Complete and total healing for Samuel - No new leukemia growth - No graft vs host disease flare ups - Pain relief in Samuel's legs - Protection from sickness for our whole family Still trusting in His mighty hand, Trish

Journal entry by Trish Richhart

I have been meaning to write an update since Samuel's clinic appointment last week, but I guess we have been keeping pretty busy. Our trip to Indy was relatively uneventful. The worst part of it was a traffic jam on I-69. The best part was a good check-up in clinic. Samuel's blood work looks great. His counts are all stable and no bad cells were seen. That buys him another 2 weeks at home without treatment. Thank you, God! In the Spring when we realized that the chemo that Samuel was getting for his relapsed leukemia was not working, we were mourning the loss of what was supposed to be his "summer of freedom" with more time at home, going into public more, and swimming which was so important to him. God is so merciful! He has kept the leukemia from growing and given him this time. Sure, he has had to deal with leg issues, but he has gotten to do so much this summer. As I was checking out at the oncology clinic and making his next appointment, I was overwhelmed with gratitude for this next two weeks. Samuel has gotten his summer of freedom in two week bites at a time. God is good Next Monday Samuel is scheduled for another bone marrow aspirate. Checking his bone marrow will give us the most accurate picture of how much leukemia he carries in his body. From January to March his MRD (minimum residual disease) increased ten fold from 0.04% to 0.4% while getting treatment. However, when we checked the bone marrow again in June, it was at 0.3% with no treatment. I consider this a gracious gift from God. Barry and I are confident that God can heal Samuel without further treatment, but realize that may not be His plan. No matter the outcome, we trust Him, realizing His ways are higher than our own. That being said, we are still optimistically hopeful that Monday's bone marrow results will be good. We are praying with that mindset. Samuel continues to adjust to life with a walker and wheelchair. He prefers not to use either. He uses the walker around the house when it is convenient and will use the wheelchair when we go out and have greater distances to walk. However, he has been sneaking in plenty of walking without either. Sunday night he developed some new pain in his right leg. It was worse yesterday and even hurt when he was sitting. Last night he developed an unusual bruise on there and it was slightly swollen. These are the signs the orthopedic doctor said to watch for because it could indicate a fracture. So I will be calling his office this morning. Praying it is not actually fractured because that would certainly limit his freedom more. While on the subject of prayer, my mother could use some, as well. She has been having back pain for some time now and had an MRI. It was discovered that she has a compression fracture in her spine which will require surgery. Thankfully, it is not a very invasive procedure which can be done outpatient. "In God, whose word I praise— in God I trust and am not afraid." Psalm 56:4 NIV Prayer Requests: - Complete and total healing for Samuel - No leukemia growth - No flare ups of graft vs host disease - Protection of Samuel's legs from fractures and pain relief - Protection from sickness - For my mom's surgery on Thursday Still trusting in His mighty hand, Trish

Journal entry by Trish Richhart

Tuesday was a Riley day. Abi had been scheduled for a check up with her GI doctor for quite a while. Fortunately, I was able to schedule Samuel's orthopedic doctor appointment on the same day. The only downside was that there were no available appointments at the Downtown Riley where Abi was scheduled, but only at the North Riley location in Carmel. This made the day longer, but thankfully required only one trip. Abi's appointment was just a basic follow up. The GI doctor seems pretty much at the end of her expertise concerning Abi's issues. The integrative doctor that she is seeing locally has been more successful in finding and addressing the causes for Abi s pain and nausea. Although she doesnt feel perfectly fine, she has been much better. We rejoice in that. I had many questions about Samuel's condition for the orthopedic doctor. Unfortunately, he did not have definitive answers for many of them. He did show me Samuel's MRI and confirmed that it does show areas of avascular necrosis (AVN). About 5 cm in each of his legs is affected. It is the lower part of each tibia bone. That means that section has had inadequate blood flow resulting in bone death. This would be the source of his pain. The good news is that it doesn't appear that the ankle joint or the growth plate has been affected. We don't, however, know whether the AVN will progress further. We were told that it won't get better, though. So when I asked the doctor what this means for Samuel long term, he has no answer. He wants Samuel to get a high resolution x-ray in 6 weeks to look for changes. They will also look at the rest of his legs giving us the opportinity to check his knees which regularly hurt. He consulted with another doctor and the consensus is that Samuel should only be minimally weight bearing right now because he is at risk of fracturing those weakened bones. In light of this Samuel got a walker to use as well as an order for a wheelchair that will be delivered to the house. I have mixed emotions about this. Part of me is relieved. I hate seeing Samuel in so much pain and I am grateful that he will have something that allows him to get around easier. When we were on his wish trip, we used a wheelchair and it was a huge blessing. He could not have done what we did if he had to walk and the wheelchair actually gave him freedom to do more. The other part of me is struggling with the idea that this could be as good as it gets. I am having a hard time with this realization. He may forever need the wheelchair and walker on this side of heaven. And that makes me really sad. However, I need to put this in perspective. If his leukemia would go away and this is the worst he has to deal with, I would rejoice. I have to fall back on the knowledge that I trust a God who is bigger than all of this and He has a plan for Samuel. He can use Samuel no matter what his physical condition. Next Tuesday Samuel will have his 2 week clinic check up. He will have labs drawn to check his blood. Hopefully everything will look stable with no signs of disease. We are in this strange place of watching and waiting, hoping and praying for his leukemia to just go away. From a medical perspective, that will not naturally happen. But God works in ways beyond the natural world and we still hope and pray for a miracle in Samuel's body. The Lord says, “My thoughts are not like your thoughts. Your ways are not like my ways. Just as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts. Isaiah 55:8‭-‬9 Prayer Requests: - Complete and total healing for Samuel - No leukemia growth - No graft vs host disease flare ups - Pain relief from AVN - Samuel to continue to get strong despite the AVN - Protection from sickness - For Samuel's doctors and nurses - We are thankful to God for them. May He give them wisdom - Unspoken requests Still trusting in His mighty hand, Trish

Journal entry by Trish Richhart

Monday morning Samuel and I made the trip down to Riley. He was scheduled for an MRI followed by an oncology clinic visit. I was somewhat concerned about how accessing his port would go. Last Saturday Samuel told me his port felt weird, like it had shifted. When I felt for it under His skin, I noticed a definite ridge that I had never noticed before. I was concerned that it had turned significantly or even flipped over. My worry was that accessing it on Monday would not go smoothly which, for Samuel, would be a big deal. I was told that his MRI would be done with contrast which is administered through IV. That meant his port would not be accessed in clinic with the experienced oncology nurses, but in MRI instead. Thankfully, the contrast did not end up being required for the MRI. They imaged Samuel's heels, ankles and a small part of his legs. We were supposed to do his knees, as well, but insurance did not cooperate and would not cover it despite the fact that he has had knee pain before and had previously been x-rayed there. On the areas that were imaged, they saw dark spots that indicate AVN (avascular necrosis) which is where part of the bone dies from lack of blood flow. We knew he was at risk for this due to the steroids that he took for over a year. We have been told that there is no real cure for this, but it can get better over time. Samuel has been referred to an orthopedic doctor which we will see next Tuesday. He should be able to give us more information and help us know how best to handle this. While this diagnosis is disappointing, I am however, thankful to know the reason for Samuel's pain and hopefully be able to take some steps to give him some relief. After Samuels' s MRI, we proceeded to his clinic appointment. Thankfully, although his port was indeed shifted, the nurse was able to access is just fine. It was a bit wonky, though. While it flushed very easily with no issues, it did not draw well at all. It took two experienced nurses putting Samuel in all kinds of weird positions to get just barely enough blood for his labs. This is the first time we have had this difficulty with his port and I can't help but think that this is due to its shifted position and not a blockage. Hopefully, when he returns to clinic in two weeks it will be shifted back to its original spot and function better. Overall, excluding his leg and foot pain, Samuel has been feeling pretty well. His blood counts have been staying very stable with no evidence of disease there. The leukemia appears to be staying at a microscopic level. This is such a mercy from God, allowing him to stay at home and continue to heal from his treatment and get stronger. This has allowed me, for the first time in a long while, to really focus some time on our home, bringing neglected things back to order. I have been cleaning and decluttering like crazy knowing that I have a limited window of opportunity to do this before Samuel needs to start treatment again and we jump back into survival mode. This time is a gift and I am so grateful for it. The plan right now for Samuel is to check his blood in clinic every two weeks and check his bone marrow for disease every two months. (We last checked it in June.) In the meantime we will address his AVN, figure out how we can get him active so he can get stronger and lose his excess steroid weight which could only help with the pain in his legs. All the while we will be thanking God for each day He gives us. "Always be joyful. Pray continually, and give thanks whatever happens. That is what God wants for you in Christ Jesus." 1 Thessalonians 5:16‭-‬18 NCV PRAYER REQUESTS: - Complete and total healing for Samuel - No leukemia growth - No graft vs host disease flare ups - No fevers and protection from sickness for Samuel (and the rest of the family, too) - Samuel to heal from his cancer treatments and get strong - Wisdom for Samuel's orthopedic doctor to help his AVN, relieve his pain and allow him to be active - For our family to honor God with our days Still trusting in His mighty hand, Trish

Journal entry by Trish Richhart

Last evening Barry and I took the kids to see the fireworks show in Leo. As we sat there watching the fireflies rise up from the field while we waited all nestled together on our blankets, I couldn't help but feel overwhelming gratitude. I remember so clearly coming to this same spot last year to see the fireworks show. It was shortly after we had found out that Samuel had relapsed (the first time) and the future looked so uncertain. I watched him playing with his siblings and wondered if this would be his very last 4th of July, his last fireworks. The thought still grieves me so. It comes from understanding what he is up against. Yet last night, there we sat all together one year later, Samuel and his brothers and sisters, laughing and enjoying the beautiful evening. God has shown us so much mercy! My heart overflows with gratitude. And not just because Samuel is still with us, but also for the peace He has brought us in this moment despite the fact that Samuel still carries within him that dreaded leukemia. I do not know what the next year will bring, but I am thankful right now for the mercy He has shown. However that will not stop me from humbly asking, 'Please, Lord, may I have another?" I am on my knees praying for many more Independence Day celebrations with Samuel, begging for His continued mercy. "Then you will call upon me and come and pray to me, and I will hear you.' Jeremiah 29:12 PRAYER REQUESTS: *Complete and total healing for Samuel *No leukemia growth *No graft vs host disease flare ups *No fevers and protection from sickness for Samuel (and the rest of the family, too) *Samuel to heal from his cancer treatments and get strong *Relief from pain in Samuel's ankles and knee *For our family to honor God with our days Still trusting in His mighty hand, Trish:

Journal entry by Trish Richhart

I'm not sure where the time has gone. It has been 10 days since we returned home from Samuel's wonderful wish trip. It was incredible. It almost seems unreal how much we were able to see and do in such a short time. This is especially true considering there were 9 of us including Samuel who tires quickly and needed to use a wheelchair and a toddler who is used to getting a lot more rest. We stayed at Give Kids the World Village in a big, beautiful villa. There was much to see and do there including an Ice Cream Palace where you can get ice cream all day long as often as you want, a train, an arcade, mini golf, a kids spa, pool, horseback riding and parties every night. It is an amazing place and we could have stayed there all week and had a great time, but we were given tickets to the Disney parks, Universal Studios, Sea World, and Legoland. And we took advantage of that. Not only were we given tickets, Samuel had a Genie pass that at the very least got us into the Fast Pass/Express lines and sometimes took us to the very front. We had virtually no lines to wait in. That is a game changer when visiting the parks! Samuel got to ride everything he wanted to when he wanted to. The only exception was when a ride was shut down due to weather. A good example of how well we were treated was at Universal Studios. We were headed to the Transformers ride when we came upon one of the Transformers characters doing a meet and greet. There was a long line of people waiting to get their picture taken with him. We stopped to check him out because that costume was really cool. One of the employees saw Samuel and directed us to the exit and got us up next to get our picture taken without us even asking. Then she told us to wait because Bumblebee was getting ready to come out and we were the first family to meet him, too. I love that Samuel was made to feel so special. We have been home over a week and I am still having trouble getting back to reality. We are just getting back into our regular routine. Last Monday was a bit of reality because Samuel had a clinic visit down at Riley. Thankfully his labs look great. Because his bone marrow results from right before the trip were so good, showing that the leukemia is just brewing at a very low level, the plan is to delay treatment and do labs every couple of weeks for a while. That, hopefully, will give his body an opportunity to heal and gain strength. I cannot tell you how very grateful we are that God is showing us this mercy! One thing I discussed with the NP we visited with in clinic was the fact that Samuel's ankles and feet have been hurting quite a bit. Even if he is in his feet for a short time, he has pain. This has kept him fairly inactive. So while I see his strength increasing, he still hobbles around like an old man. Because He is at risk for avascular necrosis in his joints due to all the steroids he has taken, it was decided to do an MRI at his next visit on July 10th to try and determine what is causing the pain. That is the first step to finding a solution. In the meantime, we are making an effort to get him swimming regularly so get him active without putting weight on his feet. This week I have taken some time to think about where I should be focusing my time while I am blessed to be at home. I do not wish to squander this gift of time. As you can imagine, with all our family has been through the past few years, there are many neglected projects to be done. I find it challenging to know where to start. I also know from experience that life can change overnight and we can go from quiet days at home to survival mode with Samuel in the hospital. So I will not bite off any big projects that can't be abandoned for extended periods. I am seeking Gods wisdom to balance all that I would love to get done with time spent having fun all together as a family. I pray our choices honor Him and we can live with no regrets. PRAYER REQUESTS: *Complete and total healing for Samuel *No leukemia growth *No graft vs host disease flare ups *No fevers and protection from sickness for Samuel (and the rest of the family, too) *Samuel to heal from his cancer treatments and get strong *For our family to honor God with our days Still trusting in His mighty hand, Trish PS: I have a ton of great pictures from our trip. I haven't got them sorted through yet, but this is just a small taste.

Journal entry by Trish Richhart

I wrote this two days ago on Friday on a plane to Orlando. Then we landed and got so busy that I forgot to post it. Samuel is enjoying his wish trip adventure and I will update more when I am able. If I don't soon, it is because we are all too busy having an amazing time. -------- Friday, June 9 I am writing this update from 30,000 feet. Our family has begun Samuel's wish trip and is on route to Orlando, Florida, AKA Mickey's house. What an amazing blessing! Flying is a new and exciting experience for most of the kids. They have never seen the TOPS of the clouds. When we land, we will be off to the Give Kids the World resort and a week of adventure at Disney World, Legoland, Universal Studios and Sea World. Everyone is beyond excited! Last Monday Samuel went down to Riley. He was scheduled for a checkup, labs to be drawn, and a bone marrow aspiration. His blood work looked great. His platelet count had increased and everything else is REALLY stable. There is no sign of leukemia in his peripheral blood. The bone marrow is the telling thing. It was drawn and sent away for accurate testing. So we have to wait anxiously for the results. We have been praying like crazy for Samuel's leukemia to stop growing. Yesterday I received the call from his oncologist. Samuels minimum residual disease (MRD) actually went DOWN. Two months ago it was 0.4% and now it is 0.3%. This is fantastic news! We are SO grateful to God for His mercy in this. This is such a relief to this mama's heart and buys Samuel more time. More time to be with his family, get stronger and live life. Praise God! Prayer Requests: *Complete and total healing for Samuel *Health protection from sickness and injury for Samuel, as well as the rest of the family *Safety in travel *Stamina to do all that Samuel want to do and see this week *No graft vs host disease flare ups, especially on the skin with extra sun exposure *Praise for less leukemia and prayer for no more leukemia growth Still trusting in His mighty hand, Trish

Journal entry by Trish Richhart

As I write this, Samuel is in his fourth day of chemo.  He will have ten days total.  That was a hard thing to consent to do.  The reality of what chemo does is harsh.  However, the reality of what leukemia does is harsh, too.  It would take our little boy's life.  Chemo will be hard on his little body, but the hope is that it will destroy the leukemia leaving him with life.  So far, he is handling it well.  His appetite has diminished, but he is still able to eat and keep it all in his tummy.  He is tired, but has still had the energy to beat his mom at air hockey.  Thank you, God!

After chemo, Samuel will have virtually no white blood cells, red blood cells, or platelets left.  He also won't have the bad leukemia cells either, and that's the goal.  He can be given platelets and red blood cells (hemoglobin), but he will have to make his own white blood cells.  While he has a low white blood cell count, his body will not have the ability to fight off any infection, so he will have to stay in the hospital where he is monitored closely and can be administered an antibiotic quickly should the need arise.  Once his blood count numbers rise to a certain level, he will be able to come home.  This should be anywhere from 21-28 days after the start of chemo.  Then he can be home for 1-2 weeks before the process will probably begin again.

Because of the unique form of leukemia that Samuel has, the full treatment plan is an unknown.  At the end of this first cycle, he will be reevaluated and a decision will be made as to the next step.  So, there is no way to plan ahead.  If God wants to teach us a lesson on relying on him day by day, he sure has found a way to do it!  So, we do not know what the future holds, but we do know the One who holds the future.




Samuel’s Story

Site created on November 4, 2014

“ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11


So, one day life is “normal” and the next day you get a phone call telling you to take your child to the ER for a blood transfusion.  We had no idea how our lives would change on that day.

Our son, Samuel, is five years old.  He the sixth child in a family of seven children.  He is active like most five year olds, so when we noticed a bunch of bruises on him, we didn’t think too much of it.  However, when a tiny sore on his tongue became nasty and infected looking in just a couple of days, I decided to take him to the doctor.  I pointed out the bruising and she thought it would be a good idea to go to the lab and have some blood work done.  

The next day started normal.  I was reading aloud to the kids when I received a phone call from my doctor’s office.  The nurse told me that Samuel had a critically low platelet count and that I should take him immediately to the ER for a blood transfusion. (They were at 2.)

Barry came home from work and we grabbed up Samuel and took him to Lutheran Hospital.  We were told in the ER that Samuel was to be directly admitted.  We bypassed registration and were immediately taken up to Pediatrics.  I had this horrible sense as we were walking in that he would not be leaving the hospital for a long time.

A doctor came in to speak with us.  The rest of Samuel’s blood work revealed that not only were his platelets low, but also his hemoglobin and white blood cell counts.  The doctor suspected leukemia.  My poor son who had never had blood drawn before was subjected to many needle pokes.  There was more testing, an IV, and a transfusion of both platelets and hemoglobin.

The next day, Barry and I were led into a conference room with a group of doctors and nurses while a Child Life Specialist hung out with Samuel in his room.  Both of us knew that this could not be good news.  We were told that tests confirmed that Samuel had leukemia and it was the less common AML type.  This type requires more intense treatment and is done mostly inpatient.  They told us they had scheduled us at Riley Hospital the next morning for a bone marrow draw where they would be able to better pinpoint the type with more detail and come up with a treatment plan.  

At Riley, the leukemia was confirmed, but with further testing it was discovered that he has an even rarer form of leukemia.  There are two types of leukemia most often seen in children.  The most common type is ALL (Acute lymphocytic leukemia), then there is AML (Acute myeloid leukemia).  Samuel has a combination with both,  biphenotypic acute leukemia (BAL).  It is rare in adults and even less common in children.  The odds of getting struck by lightning are higher than getting this.  

You can imagine that Barry and I were reeling from the shock.  This diagnosis and the treatment to fight it greatly affects our family in more ways than I can even count.  However, what is constantly in my mind is that my God is way bigger than leukemia AND He loves this little one even more than we do.  So, if he is putting him and all of us on this path, he has a purpose and He will use it for good.  

“And we know that in all things God works for the good of those who love him” Romans 8:28

We don’t understand, but we can trust Him.  The big picture looks overwhelming, but we can take baby steps and hold the hand of Him who has the strength to walk us through this.

“ I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” Phil. 4:11-13

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